15 Things You Should Know When Planning for Your Adult Disabled Child in Florida

Whether your disabled child is 5 or they are about to turn 18, parents of a special needs child have many things they need to plan for that other families do not.  These are some tips to help families of special needs children plan for the future.  I apologize up front for the length of this blog post, however, I wanted to make sure this information is all in one place (rather than broken up into many posts).  In the future, we may break these down and explain in greater detail.  So, stay tuned…..


  1. Know that when the child turns 18, the parent no longer has the right to make decisions for the child and this includes health care decisions, educational decisions and financial decisions. It is important to assess whether the child, upon turning 18, can sign legal documents which would allow the parent to make decisions – this would include a Durable Power of Attorney and a Health Care Surrogate Designation.  If he or she is not able to sign the documents, then determine whether guardianship would be appropriate.


  1. Have a file of all medical and educational records. If the child is still in public school, make a formal request for a psychological/educational evaluation so that you can prove the disability once they turn 18.  You will need this to show to Social Security Administration (if you are filing for SSI benefits for the child once he/she turns 18), if you are wanting services through the Agency for Persons with Disabilities (APD).  Also, if you are filing to become your child’s guardian advocate, you need to be able to show evidence that the disability began prior to the age of 18.


  1. Once the disabled child turns 18, you can file for SSI benefits and the parents’ assets and income will not count against the adult disabled child. It is important to establish the disability early on and to show it occurred prior to the age of 22 in order for the child to claim benefits later based on a parents’ work history.   Even if you do not want to draw benefits for your child, it is very important to get the disability established with Social Security Administration prior to age 22.


  1. If your child is receiving Social Security benefits prior to the age of 18 because of their disability, Social Security does a reconsideration of the disability against the adult standards once they turn 18. Nearly 50% of SSI disabled children lose their SSI benefits because they do not meet the adult standards and this is often due to the failure to provide medical records prior to the reconsideration review.


  1. If your child has Down syndrome, an intellectual disability, spina bifida, autism, cerebral palsy, or Prader-Willi syndrome, get them on the APD waitlist (if they are not already on there). The Developmental Disabilities HCBS Waiver is administered by the Agency for Persons with Disabilities (APD). It covers services for individuals with developmental disabilities, including personal care assistance, supported employment, and adult day care.


  1. Once your child starts receiving SSI, they need to be paying you for room and board. Otherwise, the child’s check will be reduced by one-third because the parents will be considered to be paying for housing.  It is a good idea to have a written rental agreement between your child and you.  If you are renting, consider adding your child’s name to the lease.  Here is a great article that discusses how to determine how much rent someone on SSI should be paying – https://howtogeton.wordpress.com/how-to-determine-rent-if-you-live-with-the-homeowner-ssi-regulations/.


  1. If you are going to be the representative payee for your child’s SSI check, make sure you understand the responsibilities – Click here to see Social Security’s “Guide for Representative Payees” – https://www.ssa.gov/pubs/EN-05-10076.pdf


  1. You need to understand the rules for SSI such as what counts as a resource/asset, what things can you pay for that will not reduce the SSI benefit your child receives, etc.  For example, if you pay for your child’s food, rent, mortgage or utilities, their benefits can be reduced up to 1/3 per month.


  1. If the child is able to work, look into helping them secure a job and make sure they earn just enough to count towards 4 quarters per year so that, once they have worked for 40 quarters, they can file for disability based on their work history which will help them secure Medicare benefits later in life. Of course, you do not want them working so much that they lose their SSI (especially if they need the Medicaid benefits that go along with it).


  1. Make sure the child has a transition plan in place between the school and vocational rehabilitation (or APD if they are eligible for a waiver). Resources will vary depending on where you live.


  1. Think about putting money into an ABLE account for your child. Not sure what ABLE accounts are?  Check out information for Florida residents – https://www.ableunited.com/


  1. It is important to remember that, as long as your child was deemed disabled prior to age 22, when you retire, or if you become disabled or die, your child will be eligible for benefits based upon your work history. This is good because the assessment does not look at their income or assets.  This benefit is known as SSDI (not SSI – which is means tested).  Also, 24 months after the child becomes eligible, he or she will then begin receiving Medicare benefits.  Your child may still want to keep their Medicaid benefits (especially if they are receiving Waiver benefits), but Medicare will be the primary coverage for health insurance.  If your child is dual eligible (receiving Medicare and Medicaid), Medicaid will pay for some or all of the Medicare Part B premiums.


  1. If your child is on your insurance, you need to figure out how long you can keep your disabled child on your insurance. Under current law, your child can stay on your health insurance until they turn 26 years old.  Some plans may allow you to keep the child on the insurance permanently as long as the parent is employed.


  1. It is so important for parents of disabled children to address their own estate planning needs so that a special needs trust can be set up for the child to inherit a portion of the parents’ estate. Equally important is talking to other family members who may want to leave something to the disabled child – you do not want the child losing SSI benefits or Medicaid which will happen if they have more than $2,000 in assets.


  1. Prepare a “letter of intent” so that, whomever is going to care for the child after you are gone, knows your child’s wants and needs. Here is a checklist you can use to make your own Letter of Intent – https://www.bridges4kids.org/letter-of-intent-form.pdf
By |2018-09-24T19:26:29+00:00September 24th, 2018|Categories: Estate Planning, Special Needs|Tags: , |Comments Off on 15 Things You Should Know When Planning for Your Adult Disabled Child in Florida